Sociocultural variables have a major impact on participation in patients treated for paediatric posterior fossa tumours.

BACKGROUND: This study investigates the severeness of participation barriers in patients surviving paediatric posterior fossa tumours (PFT) many years after treatment. In the past, aetiological studies on adverse outcome have primarily focused on pathobiological risk factors. The current analysis aims to investigate the importance of environmental variables. METHODS: On average, 10 years after diagnosis, educational and social difficulties of 42 patients surviving paediatric PFT (mean age 17 years) were inquired using a self-constructed questionnaire following the Psychosocial Resource-Orientated Assessment (PREDI). Educational or social participation barriers were defined by self- and/or proxy-reported difficulties in school or in peer relationships. Accordingly, the children and adolescents were categorized into groups of adequate and limited participation. Subsequently, the study identified potential pathobiological (treatment type, hydrocephalus, tumour relapse, gender, age at diagnosis, seizures and cerebellar mutism) and environmental (parental and maternal education, siblings, main language, discrepancies between personal and environmental values, regular physical activity and private living space) risk factors and investigated whether patients with adequate and limited participation differed in the number of risk factors. RESULTS: Almost one decade after treatment, two thirds of patients experienced educational and/or social difficulties. Patients with limited participation were more frequently associated with environmental factors such as low maternal education degree, siblings, main language other than German, discrepancies between societal and personal values and irregular physical activity, as well as the pathobiological risk factors treatment type, hydrocephalus, tumour relapse, cerebellar mutism and seizures. These variables significantly discriminated between patients with and without limited participation. CONCLUSIONS: Limited participation in patients treated for paediatric PFT is common. Next to pathobiological, also environmental risk factors play a major role in educational and social participation barriers. This highlights the fact that solely considering pathobiology is not sufficient when investigating risk factors for the emergence of late sequelae. Future aetiological studies must adopt a biopsychosocial perspective.

Evaluating the diagnostic validity of the cerebellar cognitive affective syndrome (CCAS) in pediatric posterior fossa tumor patients.

Background: The aim of this case-control study was to investigate the severity of the cerebellar cognitive affective syndrome (CCAS) in patients treated for pediatric posterior fossa tumors (PFT) and evaluate its diagnostic validity and predictive value for long-term effects. Methods: Using neuropsychological test data from 56 patients with PFT (average age: 14 years), the severity of deficits in the CCAS core areas (executive functions, verbal functions, visuospatial abilities and emotions/behaviour) was examined. Neuropsychological and academic long-term outcomes of patients with CCAS were compared to two control groups of PFT patients (treated with either surgery or surgery followed by radio-/chemotherapy) without the syndrome. Risk factors associated with various deficits were considered. Results: All but one PFT patient suffered from slight to severe impairments in at least one CCAS domain, while complete CCAS occurred in 35.7%. Seven years after tumor diagnosis CCAS patients performed worse in information processing, logical reasoning, verbal functions, visuospatial skills, and executive functioning and required more special educational support compared to the control groups. CCAS patients performed equally poor as patients treated with chemo-/radiotherapy in tasks measuring information processing speed. Risk factors were significantly associated with deficits in information processing speed but not CCAS emergence. Conclusions: Deficits in the core CCAS domains are commonly found in PFT patients, but varying in severity, which suggests the syndrome to be continuous rather than dichotomous. However, the validity of CCAS diagnosis was low and unspecific. The exclusion of relevant functions typically impaired in PFT patients (eg, information processing) resulted in difficulties being overlooked.